Wednesday, November 12, 2008

We had an 8 a.m. call time today for Pablo's GFR test. We arrived in the CHLA lobby at 8:06, and made it to the nuclear medicine lab about five minutes later. The lab techs weren't super happy that we were late, but it all worked out. Everyone was smiling in the end, including Pablo.

This morning, Pablo reeealllllly didn't want to go to the hospital. I can't recall him ever, sort of, dragging his heels like he did this morning. P wasn't the reason we were late. The culprit was 80% me (trying to hammer out hours of work in 30 minutes), and 20% Jo Ann (a lady's got to tend to her hair and make up, for God's sake!). Overall, he has developed a heightened anxiety around having his port accessed, and around pulling shirts and masks over his head. He has drastic freakouts around that stuff these days. Hope it all goes away when treatment is over in March.

Speaking of dragging heels, P's feet and legs have been heavy for the last week or so. Most days, it's worn off by mid-morning. Not the case today. By dinnertime, P's left foot was actively hurting. Thankfully, we see Dr M at noon Thursday for a check-up and an intensive meeting on Pablo's status in the physical, medical, and treatment realms.

Late this afternoon, I attended a hard hat tour of the new CHLA hospital. Let me say this: I hope Pablo only ever walks through the front doors of that place to share his experience, strength and hope with other cancer kids. I hope he never has to actually reside in one of the spacious, truly giant, private rooms. But, boy, is the new hospital gonna be SIIIIIIIIICK.... Oh boy, I just said that, didn't I?

The tour was for the hospital's board of directors, several foundations who've donated large sums of money (the Johnny Carson Foundation announced a $5M donation this afternoon), and members of the neighborhood fundraising committees. I was invited to make remarks on behalf of the Los Feliz/Silverlake committee. We've raised $750K toward our goal of $2M. Every penny that any of you have donated to us in the form of checks, cayyyysh, or via the PablovePaypal page is counted in that figure. I was proud as hell to stand up there and speak today, and to receive a round of applause on behalf of the entire Pablove community. I tried to think of as many of you as I could while I was standing at the podium. Mostly, I looked into the eyes of this room filled with business execs, philanthropists, and the amazing, bright CHLA development staff, and I thought of Pablo.

Here's a pictorial tour of our morning:

Pablo on the machine in the nuclear med lab. The nurse is pumping radioactive fluid into P's port. Once that was in, the machine scanned him from beneath the table. You can see him watching TV—I put a VHS of 'The Little Rascals' in, and he loved it! I've seen every episode of that show a hundred times, and still love it.

This is the GFR test in action. The glowing orb is P's kidney. If he had two kidneys, you'd see another orb on the right side.

The GFR test takes about four hours. Once the initial scan is done (as in above pic), P had to go back two more times (40 minutes later, and then two hours after that) for blood draws. In between GFR blood draws, Pablo downed loads of food. We went to Fred 62, and Jimmy hooked him up with a chocolate shake and some Billion Dollar pancakes (thank you Jimmy!).

In the pic above, P is eating a travel-size box of Cap'n Crunch in the CHLA cafeteria. He is 5.5 years old, and today was the first time he'd had Cap'n Crunch. Like the rest of humanity, he went mental for the stuff. Jo Ann told him that we needed a rule around sugary cereal: we can only have it at CHLA. She is a sage parent: if she hadn't done that, Pablo would demand it at home. He is becoming an expert negotiator!